HowlinMagiati2017L.pdf

REVIEW
CURRENTOPINION Autism spectrum disorder: outcomes in adulthood
Copyrig

0951-7367 Copyright � 2017 Wolte
a,b c
Patricia Howlin and Iliana Magiati
Purpose of review

Until recently, there has been little systematic study of adult life among individuals with autism spectrum
disorder (ASD) but recognition of the high psychological and social costs of ASD has led to an increase in
adult-focused research over the past decade. The aim of this review is to summarize recent empirical
findings on outcomes for adults with ASD.

Recent findings

Most research on adult outcomes in ASD indicates very limited social integration, poor job prospects and
high rates of mental health problems. However, studies vary widely in their methodology, choice of
measures and selection of participants. Thus, estimates of how many adults have significant social and
mental health problems are often conflicting. There is little consistent information on the individual, familial
or wider social factors that may facilitate more positive social and psychological outcomes. There is a
particular dearth of research on older individuals with ASD.

Summary

The very variable findings reported in this review reflect the problems of conducting research into lifetime
outcomes for individuals with a condition as heterogeneous as ASD. Much more systematic research is
needed to delineate different patterns of development in adulthood and to determine the factors influencing
these trajectories.

Keywords

adulthood, aging, autism, autism spectrum disorder, developmental trajectories, outcome
INTRODUCTION

The estimated prevalence of autism spectrum
disorder (ASD) in adults is high (11/1000 [1

&

]),
and there are increasing concerns about the poor
long-term outcome for so many individuals with
this condition. Health economists [2

&

] also high-
light the high financial costs, predicting that annual
medical and nonmedical costs of ASD in the United
States will be $268 billion for 2015 and $461 billion
for 2025 [2

&

]. Much of this expenditure is for adults,
largely because of the costs of medical care, residen-
tial or supported living accommodation and pro-
ductivity loss, both by caregivers and by individuals
themselves.
aDepartment of Psychology, Institute of Psychiatry, Psychology and
Neuroscience, King’s College, London, UK, bFaculty of Health Sciences,
University of Sydney, Sydney, New South Wales, Australia and
AIMS

The aim of the present article is to review data from
recent studies on adults with ASD with respect to:
cDepartment of Psychology, National University of Singapore, Singapore

Correspondence to Patricia Howlin, PhD, MSc, BA, Department of
(1)
Social outcomes

Psychology, Institute of Psychiatry, Psychology and Neuroscience, King’s
(2)
Trajectories of change over time

College, London SE58AF, UK. E-mail: [email protected]
(3)
Factors related to outcome

Curr Opin Psychiatry 2017, 30:69–76
(4)
Mental health

DOI:10.1097/YCO.0000000000000308
(5)
Mortality and aging
ht © 2017 Wolters Kluwe

rs Kluwer Health, Inc. All rights rese
Articles were selected from a literature search
(conducted in October 2016) of PsycINfo, Medline
and Google Scholar. The search was limited to
peer reviewed articles published in English from 1
January 2015 to 30 September 2016. (See references
for details of search strategy.) Articles were included
in the review if: the focus was on broader social/
lifetime outcomes in ASD (i.e. individuals with
autism, Asperger syndrome/disorder and autism
spectrum disorder); samples were of adequate size
(n >20); average cohort age was 18þ (any IQ level).
The search identified 1525 articles relating to adults
with ASD; of these, 43 met inclusion criteria for the
present review. Additional references outside the
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rved. www.co-psychiatry.com

mailto:[email protected]

KEY POINTS

� Research on outcomes in adult life for individuals with
ASD is growing, but findings remain inconsistent and
often conflicting.

� There is contradictory evidence on how many
individuals with ASD achieve good outcomes as adults,
and lack of agreement on how this should be measured
or how prognosis might be improved.

� In particular, data on psychiatric comorbidities in
adulthood vary widely, and it remains uncertain how
many individuals do experience serious mental
health problems.

� Nevertheless, despite lack of agreement between
studies, overall outcomes for adults with ASD in terms
of jobs, relationships, independent living and mental
health are considerably poorer than for same
age peers.

� Knowledge about factors that are associated with
good, or poor, social and psychological outcomes
remains very limited, with few studies considering
family, school or wider social influences.

Neurodevelopmental disorders
specified date range are included in order to place
current research in context.
SOCIAL OUTCOMES IN ADULTHOOD

Assessments based on ‘normative’ measures
of social functioning

Previous systematic reviews, focusing on ‘norma-
tive’ measures of social outcomes in ASD (i.e. objec-
tive measures of employment, independence, social
participation and relationships) [3] have concluded
that, even among cohorts of average intelligence,
most individuals remain highly dependent on
others for their care, social contacts are limited
and employment rates are extremely low. Moreover,
adults with ASD are more economically, education-
ally and socially disadvantaged than adults with
other developmental or intellectual disabilities [4].

A recent systematic review [5
&&

] (12 studies pub-
lished from 1967 to 2013; n ¼ 828) indicates little
change in these conclusions. Outcomes were rated
as in previous reviews [3] (i.e. ‘very good’¼high
independence and social functioning; ‘good’¼
some level of employment, some friends, largely
independent; ‘fair’¼requires some support in daily
living; ‘poor’¼requires substantial support/residen-
tial care; and ‘very poor’¼ long-stay secure care).
Forty-eight per cent of participants were rated as
having a ‘poor’/‘very poor’ outcome, and only 20%
were deemed to have a ‘good’ or ‘very good’
Copyright © 2017 Wolters Kluwer

70 www.co-psychiatry.com
outcome. However, the authors also highlight the
wide variability in findings. Thus, the mean esti-
mated percentage of individuals with a ‘good out-
come’ was 20% but with 95% confidence intervals
(CIs) varying from 14 to 27% across studies;
similarly, the 95% CIs for ‘poor outcome’ ranged
from 37 to 59%.

This variability is evident in subsequent studies.
Within a French cohort [6

&

] of adults of mixed IQ
and autism severity (n¼76; age 18 –54 years), two
thirds had a ‘poor’ or ‘very poor’ outcome and even
among those rated as having a ‘good outcome’,
none was living independently. A US-based, online
survey [7

&

] completed by parents/carers of 143 indi-
viduals with ASD (mean age 25 years) revealed that
only 22% were in work, 7% lived independently,
whereas 87% were on benefits.

Cohorts involving more cognitively and
verbally able adults generally report more positive
results, although, again figures vary. Among 50
adults with Asperger syndrome (mean childhood
IQ 100þ; mean current age 30 years) living in Swe-
den [8

&

], 40% were in full time education or inde-
pendent work, 62% were living independently, 48%
had two or more friends and 52% either currently or
in the past had a partner (14% of these were married/
cohabiting). In a German cohort of 50 adults with
Asperger syndrome [9

&

] (mean age 36 years), 46%
were currently employed, and 28% had a partner;
however, 50% depended on their families or state
benefits for support and 28% were still living with
their parents. The US survey [7

&

] also collected data
from 255 adults with ASD (mean age 38 years) who
were able to report on their own status. They
recorded relatively high levels of education (42%
batchelors degree or higher), employment (47%)
and independent living/living with a spouse or
partner (67%). Employment figures in this study
are considerably higher than reported for another
US cohort [10

&

] of individuals with ASD of average
IQ (n¼73, mean age 24 years), among whom only
one quarter was consistently employed. Neverthe-
less, even within the former sample [7

&

], over half
were unemployed and many (36%) were dependent
on federal or state benefits.
Subjective assessments of social outcomes
and quality of life

The wide variability in outcomes across studies has
led to concerns that standard concepts of what
constitutes a ‘good’ social outcome may not always
be relevant for people with ASD. For example,
higher social achievements for some individuals
may come at the cost of higher stress and poorer
mental health [11

&&

]. It has been suggested [11
&&

]

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Volume 30 � Number 2 � March 2017

Adult outcomes in ASD Howlin and Magiati
that when subjective factors such as satisfaction
with life, good physical and mental health, adequate
living conditions, supportive and fulfilling social
and family relationships are taken into account,
adult outcomes may be more positive than usually
reported. Thus, within a US cohort studied over
several decades [12

&&

] (n¼60; mean age 32 years),
many participants experienced relatively good sub-
jective Quality of Life (QoL) and their mean scores
on the World Health Organization Quality of Life
measure [13] were comparable with those of the
general population. In the Swedish cohort of indi-
viduals with Asperger syndrome [8

&

], scores on a
subjective quality of life measure [14] were also
within the average normative range (albeit at the
lower end of that range). Nevertheless, despite these
more positive findings, a recent meta-analysis of
studies of QoL across the lifespan [15

&&

] concluded
that individuals with ASD, including those of higher
intellectual and verbal ability, have a poorer QoL
than their non-ASD peers.
TRAJECTORIES OF CHANGE OVER TIME

Research on trajectories of development in ASD
generally indicates improvements over time
[8

&

,16
&

,17
&

,18
&&

] but, again, there is considerable
variability. An 8–10 year follow-up [16

&

,17
&

] in
the United States of over 300 individuals (mean
age at follow-up 22 years; 70% with IQ < 70) found that one-third (35%) showed improvements in non- verbal communication, 58% in verbal communi- cation, 40% in social interaction and 61% in repetitive/stereotyped behaviors and interests. Mal- adaptive behaviors improved in 42%. Only 12% showed a worsening in total autism symptoms and 11% in maladaptive behaviors. Another longitudinal study in the United States [18 && ] examined progress in 85 individuals first seen as children. In early adulthood (mean age 19 years), most (77, 91%) continued to meet ASD criteria; of these, 53 had an IQ below 70 and 24 had an IQ of at least 70. Eight individuals (all IQ>70) who no longer
met criteria were described as having a ‘Very Positive
Outcome’ (VPO). Trajectories of change (IQ, com-
munication, social functioning and repetitive
behaviors) among the VPO group were significantly
more positive than for participants with IQ below
70. There were also some significant differences
between the VPO group and participants of average
IQ who still met diagnostic criteria. The authors
suggest that further research focusing on different
patterns of developmental trajectories may be
important for identifying different genetic causes
as well as having implications for more individually
tailored interventions.
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0951-7367 Copyright � 2017 Wolters Kluwer Health, Inc. All rights rese
Is there ‘recovery’ from autism spectrum
disorder?
The identification of individuals with ‘Very Positive
Outcomes’ [18

&&

] raises the question of whether
there can be ‘recovery’ from ASD. The Swedish
follow-up [8

&

,19
&

] also identified a small group of
adults (11 out of 50) who no longer met diagnostic
criteria for ASD. All had an IQ in the average range,
had friends and were living independently, and all
but one was employed. Nevertheless, although
eight, either currently or in the past, had a partner
or were married, romantic relationships were lower
than in the general population; three also had some
current psychiatric comorbidity. An earlier study
[20] described 34 children (mean age 12 years; mean
IQ 111) who, although initially meeting ASD
criteria, were currently functioning ‘within normal
limits’. Recent, more detailed data analyses, how-
ever, [21 –23] indicate persisting subtle difficulties in
social understanding, pragmatic communication,
attention, self-control and emotional maturity
and in psychiatric morbidity. As yet, there are no
data on this cohort in adulthood and it is uncertain
whether these remaining differences will abate or
become more evident with age.
FACTORS RELATED TO SOCIAL
OUTCOMES IN ADULTHOOD

Intellectual and verbal functioning

Intellectual and verbal functioning in childhood are
among the strongest prognostic indicators in ASD
[3]. Few individuals with a childhood IQ below 70,
or who fail to develop functional speech, live inde-
pendently as adults and job prospects and social
integation are particularly poor. In addition, they
show less improvement in cognitive or social skills,
and greater increases in ritualistic behaviors over
time than individuals with an average IQ in child-
hood [16

&

,17
&

,18
&&

]. Nonverbal mental age at 2 years
is also predictive of independence in daily living
skills at age 21 [24

&

]. Unsurprisingly, too, persisting
communication and intellectual impairments in
adulthood (especially if associated with epilepsy)
are associated with low levels of social attainments
and independence [6

&

]. Nevertheless, even among
individuals with a childhood IQ at least 70, out-
comes can vary widely. Some show very few autism
symptoms or cognitive difficulties as young adults,
whereas others continue to experience significant
problems [18

&&

]. The relationship between IQ and
outcome in higher functioning samples also
depends on the variables studied. Thus, among
the Swedish Asperger syndrome cohort [8

&

,19
&

],
current IQ correlated highly with academic success,
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rved. www.co-psychiatry.com 71

Neurodevelopmental disorders
but not with independent living, friendships or
marital status.
Autism symptom severity

Another established predictor of adult outcome is
autism severity [3]. In the Swedish study [8

&

,19
&

],
higher levels of autism symptomatology, both in
childhood and adulthood, were associated with
reduced independence, lower rates of employment
and more limited social relationships. Similarly,
within the French cohort [6

&

], no adults with a
childhood diagnosis of ‘severe autism’ were judged
to have a ‘good’ outcome; in contrast, 40% of those
with ‘moderate autism’ and all those with a child-
hood diagnosis of Asperger syndrome were rated as
having a ‘good’ outcome.
Gender

The role of gender remains uncertain as most studies
involve so few women [25

&

]. There are some sugges-
tions that women with ASD have poorer social out-
comes, especially with respect to employment [10

&

]
and quality of life [11

&&

] than men. However, other
studies [16

&

,26
&&

] report no significant impact of
gender on autism symptoms, behavior problems
or social outcomes.
Family/environmental factors

In the community sample followed up over 8–10
years in the United States [16

&

,17
&

], higher levels of
inclusion in social and academic activities in school
were associated with more positive outcomes, over
and above individual characteristics such as age, IQ
and sex. Greater maternal praise/positivity in child-
hood also predicted higher levels of nonverbal com-
munication and social reciprocity in adulthood;
increases in maternal praise over time were associ-
ated with decreases in externalizing behaviors. In
addition, quality of mother –child relationship was
significantly associated with fewer maladaptive
behaviors at follow-up; improvements in mother –
child relationships were related to a decline in
behavioral and social problems. Other research
[11

&&

,12
&&

] has also highlighted the positive impact
of maternal warmth on adult quality of life, along
with factors such as physical health, greater inde-
pendence in daily living skills and better executive
function.

More recently, the specific impact of stress has
received attention. Among 25 Swedish adults (mean
age 34 years) [27

&

], greater perceived stress was
associated with more severe autism symptoms and
poorer coping in adulthood. A US study [28

&

,29
&

] has
Copyright © 2017 Wolters Kluwer

72 www.co-psychiatry.com
also explored the effects of stress in two groups of
adults with ASD (n¼38, 40; mean ages 23–24 years;
rates of employment 37–47%; and living independ-
ently 17 –21%). These adults experienced signifi-
cantly more stressful life events and stress than
community controls, and levels of global stress sig-
nificantly predicted overall social functioning and
social disability. In a long-term follow-up in the
United States [12

&&

], current levels of perceived
stress, together with frequency of bullying in child-
hood, were the two factors consistently linked
with poorer adult self-reported quality of life. In
turn, good quality of life was positively correlated
with better-developed daily living skills and good
physical health.
Mental health

Data on rates of psychiatric disorders in ASD are
highly variable. In a UK longitudinal study [30

&

] of
58 adults originally diagnosed as children (mean IQ
69; mean age 44 years), 28% had at some time
experienced mild-to-moderate mental health prob-
lems, and 28% had severe or very severe difficulties.
A retrospective case review [31

&

] of 474 adults
attending an ASD diagnostic clinic in the UK found
that around half (57%) had a comorbid psychiatric
disorder. A similar figure (54%) was reported in a
large US database study [32

&&

] (n¼1507 adults with
ASD). In the Swedish cohort with Asperger syn-
drome [19

&

], 54% had a current diagnosis but almost
all (94%) met lifetime criteria for a comorbid psy-
chiatric/neurodevelopmental disorder. In a Dutch
cohort [33

&&

] including older adults (n¼172, age
19 –79 years, IQ > 80), 79% met criteria for a psy-
chiatric disorder at least once in their lives. Among
participants with Asperger syndrome in the German
cohort [8

&

], 70% had at one or more psychiatric
comorbidities. In the online US survey [7

&

], 86%
of the self-report group and 73% of the proxy-report
group had at least one mental/behavioral comor-
bidity.

The majority of diagnoses/symptoms identified
in these studies relate to anxiety and/or depression,
but again there are many inconsistencies. Estimates
of depressive disorders range from 20 to 58% and
anxiety disorders from 22 to 39%; other commonly
reported difficulties include Attention Deficit Hyper-
activity Disorder (ADHD) (10–28%); tic disorders
(1–50%); Obsessive Compulsive Disorder (OCD)
(8–28%) and somatoform and eating disorders
(6–17%). Two studies [34,35

&

] report high rates of
social anxiety (50–52%). Estimates of psychotic
disorders tend to be relatively low (usually around
2–4%), but again there is wide variability, with a
recent review recording figures from 0 to 35% [36

&

].
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Volume 30 � Number 2 � March 2017

Adult outcomes in ASD Howlin and Magiati
Conflicting data on rates of mental health prob-
lems in ASD are due to many factors, including
differences in sampling, the range of conditions
selected for study and the diagnostic procedures
and measures used. Although, overall, the data
indicate that psychiatric morbidity is higher in
ASD that in the general population [32

&&

], until
there is greater methodological consistency across
studies, it remains impossible accurately to estimate
the true risk.

Estimates of substance abuse disorders are also
contradictory. A Swedish epidemiological study
[37

&

] (n¼26 986 individuals with ASD and 96 557
controls) reported a substantially increased risk of
drug [odds ratio (OR) 8.5] and alcohol abuse/
dependence (OR 4.0); risks of substance-related
crime (OR 1.4), or deaths linked to abuse were also
high (OR 3.0). A German study [8

&

] recorded sim-
ilarly high rates of drug abuse (12%) or alcohol-
related problems (18%). In contrast, in the US data-
base [32

&&

], alcohol abuse/dependency was ident-
ified in 3% and drug abuse/dependency in 4%.
Combined rates of these problems in the UK [31

&

]
and Swedish [19

&

] samples were also low (2 and 4%,
respectively). This inconsistency is highlighted in a
recent systematic review of substance abuse in ASD
[38

&&

] (n¼18 studies; 11 epidemiological). Although
estimates were generally low, figures ranged from
0.7 to 36%, making it impossible to establish a
reliable prevalence figure. The only consistent find-
ing noted in the review was the lack of knowledge
among professionals on how to treat this group of
patients, and the dearth of intervention research.
Variables associated with adult mental
health

Although there has been little systematic explora-
tion of factors related to mental health in adults
with ASD, there is some evidence of an association
between poor mental health and poorer social func-
tioning [30

&

], lower life satisfaction [39
&

] and higher
levels of autism symptoms [7

&

,19
&

,30
&

,33
&&

,40].
The relation between mental health and gender

is inconsistent, probably because of the small
numbers of women in most studies. Most research
suggests that, compared with men, women are at
greater risk of anxiety and mood disorders
[32

&&

,33
&&

] and of conditions such as dementia,
schizophrenia and bipolar disorder [32

&&

]; men tend
to have higher rates of OCD and ADHD [32

&&

].
However, two studies [30

&

,31
&

] identified no signifi-
cant sex differences in overall rates or types of
mental health problems and in the German cohort
[8

&

], whereas there were no differences in rates of
major depression, men had more anxiety symptoms
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0951-7367 Copyright � 2017 Wolters Kluwer Health, Inc. All rights rese
(53 vs. 12%) and more mood disorders than women
(32 vs. 6%).

Data on substance abuse are, yet again, contra-
dictory. In the German cohort [8

&

], more women
than men had drug abuse problems (19 vs. 9%) but
fewer had alcohol abuse/dependence (12 vs. 20%).
In contrast, in the US sample [32

&&

], drug/alcohol
problems were more frequent in men (drugs 5 vs.
3%; alcohol 4 vs. 2%).

Findings on the relationship between mental
health and age are equally confusing. The German
study [8

&

] found that young adults (<40 years) showed less psychopathology than those over 40. In the US longitudinal study [39 & ], women were more likely to show greater increases in anxiety and depressive symptoms over time, whereas ado- lescent males had more depressive symptoms that were maintained into young adulthood. In contrast, a study including a much wider age range [33 && ] (n¼344, age 19–79 years) concluded that psycho- pathology declined with age, with fewer adults in the older age group (55 –79 years) meeting criteria for any psychiatric diagnosis and particularly social phobia. Discrepancies here are likely because of the very small number of older adults in the two former samples. Findings concerning the relationship with other variables that are frequently associated with mental health in the general population (i.e. cognitive functioning, social economic status and living situ- ations, as well as life events and family factors) remain inconclusive and inconsistent. MORTALITY AND SUICIDE IN ADULTHOOD Many major chronic medical conditions occur sig- nificantly more frequently in adults with ASD than in the general population [32 && ], and mortality risks are also higher. In a Danish epidemiological study [41 & ] (total n¼1,912 904; n ASD¼20 492), mortality rates for young adults with ASD were double those in the general population, and similar to the risk for individuals with neurological or mental/behavioral disorders. Comparable rates were identified in Sweden [42] (27 122 individuals with ASD; 2,672 185 matched general population controls). Mortality was over twice as high in the ASD group (OR 2.56) and mean age of death was much lower [controls 70.2 years; ASD 53.9 years (39.5 years in those with Intellectual Disability (ID); 58.4 years in those without ID)]. The most frequent causes of death were nervous, circulatory, respiratory or diges- tive disorders and congenital malformations. Overall, death rates in men and women were similar, but women were more likely to die from endocrine disease, congenital malformations or r Health, Inc. All rights reserved. rved. www.co-psychiatry.com 73 Neurodevelopmental disorders suicide, and men from diseases of the nervous and circulatory systems. The most common cause of death in individuals with ID and ASD was epilepsy. This study [40] also found that death by suicide was significantly elevated among cognitively able individuals with ASD (OR 9.4). However, there is little consistent information on suicidal behaviors or ideation, or how frequently these result in serious or fatal suicide attempts, and reported rates of suicide in ASD vary widely (from <10 to >50%)
[41

&

]. For example, suicide attempts occurred in
only 2% of the US database cohort [32

&&

]. In the
Swedish Asperger study [19

&

] (n¼50), 13 individuals
(26%) exhibited ongoing suicidal behavior, but only
one was considered to be at high risk. This conflicts
with an earlier study [42] in which 66% of 367
individuals with a diagnosis of Asperger syndrome
reported suicidal ideation; 35% reported plans or
attempts at suicide. Recent studies in this area
[43

&&

,44] note the importance of more research into
the factors associated with suicide, especially in
more able individuals, and the need for more
reliable ways of identifying at-risk adults with ASD.
AGING

Although there has been very little investigation of
the impact of aging in ASD, current research
[45

&

,46
&&

] suggests that many cognitive skills (proc-
essing speed, attention, verbal memory, cognitive
flexibility and planning, and theory of mind) show
similar patterns of decline as in typical aging. Con-
versely, individuals with ASD may be less prone to
decline in visual and working memory than elderly
in the general population [46

&&

]. Quality of life in
ASD also seems to be less affected by age than in the
general population, but to date studies on aging in
ASD are small scale, mainly cross-sectional and con-
tain few participants aged over 60. More extensive
research in this area is crucially needed.
CONCLUSION

It is evident from this review that individuals with
ASD continue to face many challenges throughout
adulthood. Current social and health services for
adults [47,48

&

,49
&&

,50–52] are often inadequate,
resulting in high levels of stress for both individuals
themselves and their families [53

&

]. To date, how-
ever, methodological issues particularly related to
wide heterogeneity in the cohorts studied and
variability in the measures used, have resulted in
inconsistent and sometimes contradictory research
findings. We still do not know with any certainly
what proportion of individuals manage to attain
adequate levels of social integration as adults or
Copyright © 2017 Wolters Kluwer

74 www.co-psychiatry.com
how many experience a good psychological and
physical quality of life. More importantly, we are
a long way from identifying the individual, family or
environmental factors that enhance resilience and
ensure social and psychological well being in adult-
hood. High-quality adult outcome research must be
a priority if we are to meet the needs of current and
future generations of adults with ASD.

Acknowledgements

None.

Financial support and sponsorship

None.

Conflicts of interest

There are no conflicts of interest.
REFERENCES AND RECOMMENDED
READING
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& of special interest
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1.
&

Brugha TS, Spiers N, Bankart J, Cooper SA. Epidemiology of autism in adults
across age groups and ability levels. Br J Psychiatry 2016; 209:498 – 503.

Data from the recent UK Adult Psychiatric Morbidity Survey confirm that pre-
valence of autism in adults in England is 11/1000 (95% CI 3 – 19/1000).
2.
&

Leigh JP, Du J. Brief report: forecasting the …

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